treatments. treatments. treatments.

as I'm sitting here doing my vest I realized I hadnt even blogged today! so I'm dedicating this weeks entry to.. treatments :)

my daily routine consists of: 2puffs twice a day of combivent inhaler, 1neb of pulmozyme, every other month I do a pari neb of cayston 3x a day, && 1vest session of 20mins. I know I need to do my vest at least twice a day, so starting tomorrow it'll be the first thing I do when I wake up. promise :)

yesterday I got my port flushed for the very first time since having it put in && I was a nervous wreck. I almost canceled && rescheduled just so I could push it off another day, but I've been trying to get out of that type of mindset for awhile now && cant be afraid of the things that could potentially save my life. I dont care how much I may not enjoy it, this whole disease I was born w is much bigger than just me. && I honestly think it would be so selfish of me to not try everything in my power to keep myself healthy && living as long as I possibly can, when it comes right down to it. I owe everybody that.

so like I've said before, I have only been honestly open about my cf since last month && I've met so many new ppl w this disease online. && I've only known a couple in person.  but I didnt realize how much of an effect it would have on me until I tried it. I didnt know it could help so much in just the little I've done. I hope to someday help somebody else w this disease. whether it be just by lending an open ear, or volunteering w the foundation.

xx

happy valentines.

( happy valentines from me && my loves ♡ )

first of all: happy valentines && secondly: w all of the business && craziness today, I almost forgot to blog!

ohk, so no "holiday" goes by w-out some mishaps.... things in general just kept breaking, or spilling, or getting ruined. it truly was not our day! but even though we had some bumps along the way today, overall I wouldnt want to spend it w anyone else. I love you, babe :)





 


we recently spoiled our Ashkitty w a 3tier cat post - twas only $40 @ walmart! I call it his little castle. he loves it && can lurk on us from above all he wants ;)
it may seem weird, but having a kitty has really helped me. I've had pets before, but never fully felt mine. they always got taken/given away. but w this kitty, its almost like a therapeutic thangg. he helps keep me calm && the cat hair doesnt even bother me like other ppls animals seem to. if I'm at someones house too long, their animals hair (or something) gets to me. idk why..

so all day long I've been having these little headaches. && they've made me paranoid about my co2 levels. I havent had a serious headache since the hospital && thats when my co2 levels were crazy high, giving me migraines rather. so I'm thinking tomorrow I'm gonna call my dr && just let him know how I'm feeling && to get some peace of mind. I know its most likely all in my head, but its better to be cautious than not care about myself at all right?

alright so a little bit of heavy: I'm a firm believer in "everything happens for a reason," so my mind keeps coming back to something lately.. I was meant to have CF. but why? I really dont understand why certain ppl were meant to be born w things they have noo control over. its not like I smoked && gave myself crappy lungs. no, I was born w crappy lungs. && in NO way do I blame my parents for this, but its not my fault either. so why me? yes, its made me a lot stronger than an average 20yr old should have to be. && yes, it makes me appreciate everything && take nothing/no one for granted. so for those key things, I'm warm to the idea of having it. but on most days.. it just plain sucks! && I'll admit there have been times where I just wanna quit all my meds && just give up. but thats not me. && never will be. I was born a fighter && will continue to fight for my very last breath. but there is no way that this disease defines me, nor gives me an expiration date. I have never once believed in that. yeah it affects us all differently, but its not a given loss. we can do everything in our power && still not have the outcome we dreamed of, but its never a loss. the only way to lose to CF, would be to give up. && us CF'rs are not quitters! we're one of the strongest ppl you will ever meet. && I'm meeting more&&more everyday. && I love it :)

xx

finally out of the hospital !!

hey y'all!

( upper right side of my chest )

so for my 3rd installment of my blog, I'm gonna talk about getting out of the hospital :) I got out exactly 1week ago && was in for a total of 3weeks. my longest stay thus far. but just before I got out, I got an access port placed in my chest. a couple of days ago I was able to take off the bandage && this is what it looks like now....

its healing && I'm getting used to it slowly, but its quite a change for me.. I used to be against this sorta thing because I never wanted something just staying in me for long periods of time. but in the CF world, we literally will do anything to save our lives :)

so w this port, I have to go to this place to get it flushed once a month. to avoid clotting n such. each time before I go in, I have to put on some numbing cream directly onto the site. because to flush it, they have to stick a needle into my skin to the port to access it. they told me that over time I'll develop scar tissue && wont feel the needle eventually. to be honest, I'm worried about the first time they do this. not because of the pain, thats second nature to me by now. but because it hasnt even been accessed yet && I'm sure it'll work fine, but theres still that worry of it not working.

it doesnt necessarily hurt anymore, I feel it less && less each day, but when I take a deep breath in or cough I feel this little tug almost. its not a worrisome experience, just getting used to it. I'm always afraid that the littlest movement will cause it to come loose or make my heart flutter like they warned me about. last night I thought I had some food poisoning from taco bell && threw up just a little, from which I was terrified of. luckily nothing bad came from it && it turns out I didnt have food poisoning. just another "its all in my head" situations. I have those a lot....

soo the day I got home from the hospital, my boyfriend had an awesome surprise for me.. he knew I'd been wanting to learn guitar for awhile now so he got me one!!
I'm so excited to learn! we still have to get strings for it, but oh well. just having it makes me happy. when I was little it was my dream to become a singer. but you need talent for that ;) I've heard of CF'rs who sing, which is amazing to me. but just learning to play would be enough :) for those of you who havent heard of them yet, check out the Furches twins! they're a pair of twins w CF who sing! here are their links: https://www.facebook.com/pages/FurchesTwins/231563516932721?ref=ts&fref=ts, https://twitter.com/gwynnefurches, https://twitter.com/JessalovesMJ, instagram.com/furchestwins, http://www.youtube.com/user/FurchesTwins.

as I mentioned in my first post, I was diagnosed at 10yrs old. so for the past 10yrs pretty much, I'd been fairly closed off about talking about my CF. of course my family knew. && close friends. && if anyone asked about details, I would tell em. but no one knew the depth. but at the beginning of this month, idk what happened, but I decided to become more open about it. I started this blog, discovered a couple social networking sites ( cysticlife.org && cysticfibrosisconnect.com ), && in the past couple of days alone I've made 50+ friends w CF on facebook! talking/comparing w others w CF about CF has really helped && I know it'll help a lot in the long run. I even find myself excited for thursdays just so I can blog about my life! :)

xx

" beauty is how you feel inside.
&& it reflects in your eyes.
it is not something physical "
♥